Health-law repeal means cuts in autism care

In a Jan. 6 letter to Republican representatives in Congress, Gov. Matt Bevin asked them to throw out the Affordable Care Act, saying regulation of health insurance should be given back to individual states.

Bevin is advocating sending us back to the time when individuals with chronic medical conditions and disabilities had to beg legislators to get even minimal coverage for their conditions, when insurance-industry lobbyists decided what they could tolerate and then strongly encouraged legislators as to how to vote.

Let’s review what coverage was like when the state was fully in charge of regulating health insurance.

My daughter, Amelia, was born in 1992. In 1995, she was diagnosed with autism. When Amelia was young and the state was in charge of regulating our health insurance there was no coverage for treatment of her autism in Kentucky.

In fact, in 1995 Kentucky’s insurance regulations actually had language making it so we could not buy coverage for her autism (autism was an exclusion in state insurance legislation).

In 1998, my husband and I, along with others, testified before state legislators to implore them to allow autism treatment to be covered. Legislators resisted.

As a way of getting it through, advocates had to agree to a spending cap for coverage of $500 a month. Back then, that would cover one hour per week of occupational therapy and one hour per week of speech therapy.

At that time, experts in the field of autism were recommending 20 hours of therapy and intervention per week for children with autism. And one of the most successful interventions, Applied Behavior Analysis, was not allowed to be covered, despite research showing it was an effective intervention.

Per a document on the Kentucky Department of Insurance website in January 2008, “In 2005, Kentucky’s legislative changes allowed health insurers to offer a basic health benefit plan which can exclude coverage for autism.” So again, individuals might find themselves in a situation where they had no insurance coverage when diagnosed with autism.

Bills to improve Kentucky autism insurance coverage were introduced in the 2008 and 2009 legislative sessions, but did not make it into law. Advocates were trying to change the law to get the research-based intervention of ABA covered and to increase the $500 a month limit that had been put on coverage.

Finally in 2010, advocates, along with input from many concerned families and supporters of those with autism, managed to get legislation passed that increased the monthly limit on treatment to $1,000 and added language that required ABA to be covered.

In May 2012, the Department of Insurance issued an advisory opinion because insurance companies were still refusing to provide coverage for ABA. To this day, we still get questions at the Autism Society of the Bluegrass support group from families who are having difficulty getting their insurance companies to cover services.

The National Research Council recommends preschool children with autism receive approximately 25 hours of structured therapeutic intervention per week. Most therapies cost $75 to $90 or more per hour.

The ACA finally allowed people who have chronic health conditions, like autism, to be guaranteed coverage — a huge relief for families. In my daughter’s lifetime she has gone from no possibility of insurance coverage for her neurodevelopmental disability to a guarantee of coverage.

It took 21 years of advocating for autism coverage in Kentucky to get where we are today. Going backward to having the state regulate health insurance coverage is going to be harmful to people in situations similar to hers.

No citizen should have to beg the legislature to cover a chronic health condition. Congress should not repeal the ACA.

This story was originally published February 10, 2017 at 8:00 PM with the headline "Health-law repeal means cuts in autism care."